“Every vaguely positive emotion was tinged with grief, pain and utter, all-consuming, terror”

Beth and Sean from Lancaster have experienced 9 losses in total. After her first living baby was born in 2017, Beth was diagnosed with Chronic Histiocytic Intervillositis (CHI), a rare condition that causes placental failure. With support from Professor Alex Heazell at Tommy’s Rainbow Clinic, Beth’s second living baby was born prematurely at 35 weeks in March 2020, during the height of the pandemic.

 My husband and I started trying for a baby in early 2015, just after we got married. We were in our mid-twenties, and had no idea that we had such a rocky road ahead. We conceived very quickly, but over the course of the next year and a half experienced 3 early miscarriages and the loss of our first little boy, James.

By early 2016, we knew that something was wrong and were referred to the recurrent miscarriage clinic at St Mary’s Hospital in Paddington for tests. I was so relieved when I was diagnosed with a blood clotting disorder. Finally, we had identified a problem that could be treated, and could move forward.

A complicated pregnancy

The diagnosis meant that as soon as I became pregnant later that year, I was prescribed blood thinners. I was also eligible for early and regular scans, but still found the pregnancy extremely stressful. At the 20 week scan, a huge bleed was identified, and a few weeks later, I was diagnosed with Gestational Diabetes. Just at the point when I had thought we would be able to relax slightly, things seemed to be going wrong again. However, with amazing care from my local hospital in Lancaster, we made it to 37 weeks and in February 2017 I gave birth to a healthy baby boy. Our rainbow.

When our rainbow baby turned one, we started trying for a sibling for him. Initially, we were hopeful that the blood thinners would again mean a fairly straightforward pregnancy, but unfortunately that was not the case. Over the following year, we had yet another early miscarriage, as well as two more second trimester losses. In the space of a year, we had to say goodbye to two baby girls, Grace and Faith, who were both born sleeping.

We need to talk more about the realities of baby loss

During my pregnancy with Grace, we had periods of feeling very hopeful. We had regular scans and saw her heartbeat several times. We had no reason to think that the blood thinners wouldn’t work for us again. However, at one of our routine scans, the consultant noticed that she wasn’t growing as expected. Over the course of the next few agonising weeks, we had to return for scan after scan and to watch as our daughter’s heartbeat got weaker and slower, until finally it stopped. Soon after this, I gave birth to Grace in a bathroom at home.

I don’t want to upset anyone, but I don’t think we talk enough about the stark reality of losses. I had to put my daughter in a Tupperware container in a cool bag, and drive her to the hospital with my son in the back in his car seat. It’s not a journey that any parent should have to make.

“Looking back, I definitely blamed myself after losing Grace. My blood sugars were very high and I lost a lot of weight during my first trimester. I was eventually diagnosed with Type 1 Diabetes, but at this stage when I expressed my concerns, I felt like no one was listening to me”

After we lost Grace, her body and my placental tissue were sent for testing. I was diagnosed with a very rare autoimmune condition called Chronic Histiocytic Intervillositis (CHI). The first thing I did when I left the results appointment with the consultant was to read up about the condition, which often causes late miscarriage and stillbirth and has a very high recurrence rate.

I was relieved to find a small community group on Facebook. At that point, it only had about 300 members, but it was such a relief to be able to speak to women all over the world who had received the same devastating diagnosis as I had. I was also very quickly recommended to get in touch with Professor Alex Heazell, a specialist obstetric consultant at Tommy’s Rainbow Clinic in Manchester. I began to learn more about the pioneering treatment he was using to treat people with CHI.

However, I was living in Dublin at this time, and the consultant at my local hospital was not willing to prescribe the medication recommended by Prof Heazell. When I became pregnant with Faith, they instead recommended that I take steroids throughout the pregnancy. These caused side effects which resulted in me being hospitalised in the first trimester, but we felt tentatively hopeful after the first couple of scans seemed normal. However, it eventually became clear that, once again, the baby wasn’t growing as expected. We assumed that CHI was the cause, but it ultimately turned out that she had chromosomal abnormalities that were incompatible with life. It felt like a cruel twist of fate to be told this loss was ‘just bad luck’, when I had already been diagnosed with two different conditions which can cause miscarriage or stillbirth, and had already lost 6 babies previously.

When Faith was born, I was desperate to know if our baby was a boy or a girl. However, when a baby is born during the second trimester, and especially when they are growth restricted, it’s not always easy to identify their sex. We therefore spent more than two months grieving for a little boy- naming him and imagining who he might have been. However, when the pathology results came back, we found out that our baby had been a girl. I have since found out that this is an experience shared by women both in the CHI and Tommy’s Facebook groups.

“It was an incredibly traumatic experience for me, as I had to completely readjust and grieve our loss all over again, just when we had started to move forward. It was a truly horrible thing to have to go through.”

In early 2019, we had our first pre-conception appointment at the Tommy’s Rainbow Clinic, and I was finally prescribed the additional medication I had been denied in Dublin. However, we had two more early miscarriages in quick succession. I was devastated and exhausted, and very close to giving up hope at this point. I had started to look to the future and research alternative options for completing our family, such as gestational surrogacy, when I became pregnant again. I had just turned 30, and was pregnant for the eleventh time.

Preparing to say goodbye every single day for 9 months

Pregnancy after loss is unspeakably tough. There is joy, and there might be hope...or that might be stamped out by fear. But any and every vaguely positive emotion is tinged with grief, pain and utter, all-consuming, terror.

Every single day of my pregnancy, I prepared myself to say goodbye to the little boy I was carrying, just as I said goodbye to his two big sisters in 2018, one of his brothers in 2015, and to 6 other tiny, unnamed, unknown siblings over the years. Every morning, I woke up and wondered if that day would be the day that we’d have to say goodbye all over again. And every night, I tried not to sleep in case he died while I slept.

Between finding out about him at just over 3 weeks pregnant, and giving birth at 35 weeks, I had 22 scans in total. Each would yield a few hours of reassurance, but soon I would be back to thinking the worst. Thankfully, though, we were back in England and being cared for by Prof Heazell and the team at the Tommy’s Rainbow Clinic, in conjunction with the lovely team who had looked after me during my first rainbow pregnancy.

“The Tommy’s Rainbow Clinic was like a breath of fresh air. It felt so liberating to spend time in an environment where it was okay to talk about all of my babies. The trauma and grief I’d experienced was fully acknowledged for the first time, and I was given the space to talk about it, not just for the bearing it had on my current pregnancy.”

Pregnancy during a global pandemic

At 34 weeks, the day  that the lockdown was announced, I couldn’t keep my blood sugars up, whatever I tried. This can be a sign of placental failure, so I was asked to go in to be monitored by the diabetes midwife. When I arrived, I was told that I would be admitted and prepared for induction.

I spent a week in hospital, by myself, waiting to give birth. I had to receive steroid injections, to prepare the baby for premature birth. But because I have diabetes, this had to be done on labour ward so I could be put on an insulin drip to control my sugar levels. I was woken every hour for 48 hours so my sugars could be checked and the drip adjusted. Even once induction was underway, it took days for me to get into labour. Those days were long, exhausting, lonely and terrifying.

Eventually, our son was born at 35 weeks after a quick and intense labour. He was absolutely fine and miraculously, didn’t need any special care. Four months on, I still find it very difficult to believe he’s here and he’s okay, and I’m receiving treatment for PTSD.

A ‘rainbow pregnancy’

The symbol of the rainbow baby is so powerfully joyful that I think we can sometimes forget that they’re not only born out of the storm of previous loss, but also the storm of agony and terror that is pregnancy after loss. It’s an attractive concept, but I sometimes wonder if the term ‘rainbow’ fits with my experience. I could barely bring myself to even entertain the thought that he might arrive safe and sound. I just had to take one day at a time. That kind of terror isn’t just erased by a healthy birth.

“We don’t talk enough about how traumatic pregnancies after loss are- even if they go well. Hindsight is a wonderful thing, but no woman pregnant after loss can be sure that things will turn out well. Many will be convinced that they won’t, but even if they do, she is still a grieving mother.”

I think it’s crucially important that we create a culture which allows women with rainbow babies to continue to express their grief and trauma, without feeling they are being ungrateful for what they have. We’re still bereaved parents, and the safe arrival of a rainbow baby doesn’t take that pain and trauma away. In fact, the postnatal period after a healthy birth can be a flashpoint for mental health issues even in women who haven’t previously experienced baby loss. Making women feel that a rainbow birth should be their ‘happily ever after’ risks not allowing them to continue to express and work through any difficulties they face. It’s just the baby loss taboo in a different guise, and we must work to combat it.

Follow Beth’s journey on Instagram, @ourrainbowadventures

 

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